I was diagnosed with Myelofibrosis in July of 2005. A bit of a shock I must say, but my haematologist said not to worry too much as it was a very slow progressing disorder and it was very likely that something else would get me before myelofibrosis did. I probably had decades to go before that might happen. OK, lets get on with life the best I can then.
Well, things don’t always go to plan, do they? In November 2010 I have been transfusion dependent for about two years. I have a spleen so big that my wife calls it the twins because of the size of my belly and a transfusion lasts about 3 weeks if I’m lucky. So they top me up and when my haemoglobin gets back down t 90 g/L, in goes another 3 units.
My white cells are all down too, except for the lymphocytes for some reason, which have remained normal. Neutrophils are now about 0.3 so I should be prone to every bug around, but I don’t seem to get sick any more often than I ever did. And my platelets are pretty well normal too, so I’m not a bleeder. So I carry on with a reasonably normal, if not very physical life while I wait for the research teams to come up with the goods. I know there are some very promising initial results being published but, hey guys, hurry up – I don’t know how long I’ve got! Joking aside, it does look like 2011 will be the year of the first approved treatment for myelofibrosis, something that I am looking forward to.
I have become used to being tired most of the time, and put up with feeling sick and/or uncomfortable with a belly that looks like I’m nearly ready to deliver. I sleep sitting up in bed mostly now days because I don’t breath properly lying down. But I still love to take the dog for a walk most days. She’s getting older so we don’t walk as fast or as far as we used to but we do our half an hour a day, which is more than a lot of people.
There is a saying about people with myelofibrosis which goes something like this; Most days you feel sick and tired, but on the days you don’t, you think about how sick and tired you are of being sick and tired.
Sure, it gets me down sometimes, that’s human nature. But you can focus on how badly off you are, or you can focus on what you can still achieve in your life. So I try to stay positive because I still have some goals I want to reach. So follow me, we’ve got unfinished business.
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